+ Site Statistics
+ Search Articles
+ PDF Full Text Service
How our service works
Request PDF Full Text
+ Follow Us
Follow on Facebook
Follow on Twitter
Follow on LinkedIn
+ Subscribe to Site Feeds
Most Shared
PDF Full Text
+ Translate
+ Recently Requested

Population data science: advancing the safe use of population data for public benefit

Population data science: advancing the safe use of population data for public benefit

Epidemiology and Health 40: E2018061

The value of using population data to answer important questions for individual and societal benefit has never been greater. Governments and research funders world-wide are recognizing this potential and making major investments in data-intensive initiatives. However, there are challenges to overcome so that safe, socially-acceptable data sharing can be achieved. This paper outlines the field of population data science, the International Population Data Linkage Network (IPDLN), and their roles in advancing data-intensive research. We provide an overview of core concepts and major challenges for data-intensive research, with a particular focus on ethical, legal, and societal implications (ELSI). Using international case studies, we show how challenges can be addressed and lessons learned in advancing the safe, socially-acceptable use of population data for public benefit. Based on the case studies, we discuss the common ELSI principles in operation, we illustrate examples of a data scrutiny panel and a consumer panel, and we propose a set of ELSI-based recommendations to inform new and developing data-intensive initiatives.We conclude that although there are many ELSI issues to be overcome, there has never been a better time or more potential to leverage the benefits of population data for public benefit. A variety of initiatives, with different operating models, have pioneered the way in addressing many challenges. However, the work is not static, as the ELSI environment is constantly evolving, thus requiring continual mutual learning and improvement via the IPDLN and beyond.

Please choose payment method:

(PDF emailed within 1 workday: $29.90)

Accession: 066446022

Download citation: RISBibTeXText

PMID: 30703857

Related references

Population data in social science data archives: the survey holdings of the Roper Public Opinion Research Center. Demography 14(1): 141-144, 1977

Public and Population Health Informatics: The Bridging of Big Data to Benefit Communities. Yearbook of Medical Informatics 27(1): 199-206, 2018

Crowdsourced data collection for public health: A comparison with nationally representative, population tobacco use data. Preventive Medicine 102: 93-99, 2017

Missing data and chance variation in public reporting of cancer stage at diagnosis: Cross-sectional analysis of population-based data in England. Cancer Epidemiology 52: 28-42, 2017

Announcement of population data: genetic data for 17 Y-STR AmpFℓSTR® Yfiler™ markers from an immigrant Pakistani population in the UK (British Pakistanis). Forensic Science International. Genetics 7(2): E40-E42, 2013

Advancing population health science to public health policy. Disaster Medicine and Public Health Preparedness 12(4): 421, 2018

Prevalence of Cardiovascular Risk Factors at The Population Level: A Comparison of Ambulatory Physician-Coded Claims Data With Clinical Data From A Population-Based Study. Gesundheitswesen ) 2018, 2018

Analysis of experimental population data with population models Better inferences from complex data. Ecological Society of America Annual Meeting Abstracts 87: 110, 2002

Advancing chemical risk assessment decision-making with population variability data: challenges and opportunities. Mammalian Genome 29(1-2): 182-189, 2018

Population data on 14 STR loci from population of Serbia and Montenegro (new and renewed data). Forensic Science International 151(2-3): 315-316, 2005

Estimation of population traits in German Landrace pigs on the basis of data from the Mariensee Herdbook System. 2. Estimation of population traits for performance-tested young auction boars and of genetic correlations between performance-testing data and half-sib station test data with reference to genotype x environment interactions. Zuchtungskunde 58(3): 184-195, 1986

Population variation in biomonitoring data for persistent organic pollutants (POPs): an examination of multiple population-based datasets for application to Australian pooled biomonitoring data. Environment International 68: 127-138, 2014

The Network for Analysing Longitudinal Population-based HIV/AIDS data on Africa (ALPHA): Data on mortality, by HIV status and stage on the HIV care continuum, among the general population in seven longitudinal studies between 1989 and 2014. Gates Open Research 1: 4, 2018

A method for predicting profit population of waterside by using spatial population distribution that was estimated from population census and landuse data. Journal of Rural Planning Association 23(2): 128-136, 2004

Population data of five genetic markers in the Turkish population: comparison with four American population groups. Anthropologischer Anzeiger; Bericht Uber die Biologisch-Anthropologische Literatur 60(3): 261-265, 2002